Earlier this year, Marti Hill, patient and support group leader from the Tampa/St. Petersburg area, visited her congressmen in Washington to discuss issues that are important to her as a patient and to make some very specific requests that would benefit the myeloma community.

08.01.10

The Power of Advocacy

Congratulations and THANK YOU to Marti Hill, support group leader from Tampa/St. Petersburg area and patient for being the IMF’s Advocate of the Month!

Earlier this year, Marti, along with our advocacy team, visited her congressmen in Washington to discuss issues that are important to her as a patient and to make some very specific requests that would benefit the myeloma community. I asked Marti, as a patient who hasn’t participated in meetings like this before, to tell everyone what this experience meant to her.

In Her Own Words

“A Spring trip to D.C. What could be better? What I didn’t expect was that the experience of meeting my legislators’ staffers would be a pleasant one. But given the preparation on Christine’s part, the encouragement on Arin’s part, I have become a believer in the power of advocacy. One of the things that worked for me was lowering my expectations. That seemed to allow me to spend energy on getting clear about my message to these people and that made all the difference. What I wanted most of all was a conversation in which I was heard. That happened. Getting passionate about the power of research (read: I am still alive) and articulating the importance of my own story connects so many of us on this road. Each one of us has a unique story and sharing it with our legislators has the potential of bringing much needed research money to this cancer called multiple myeloma.”-Marti Hill

Delivering Our Messages
By Arin Assero, Director of Advocacy

The day started off with a meeting at the office of Representative Bill Young (REP-FL-10), who is a member of the House Appropriations Committee, and more importantly a ranking member of the Department of Defense (DoD) Appropriations Subcommittee. Because of his standing on this committee, Marti started the discussion with research and how important it is to her as a patient, which presented the perfect opportunity to discuss appropriations requests for Fiscal Year (FY) 2011.

Marti, along with the help of Christine Murphy, our Director of Government Affairs, requested that Representative Young support $50 million for the Peer-Reviewed Cancer Research Program (PRCRP), funded through the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP). In addition to that, she talked about further funding opportunities through the NIH and the CDC, specifically, the Geraldine Ferraro Blood Cancer Program, which, in the past, has helped the IMF reach out to the underserved community. In addition to research funding, Marti focused the conversation on policy when she asked for Rep. Young to co-sponser the Cancer Coverage Parity Act (HR 2366). This bill, which the IMF, along with the help of many patients, has worked on at both the federal and state levels, eliminates disparities in insurance coverage for oral and intravenous treatments. As you’ve heard from previous advocates, it’s an issue that affects many patients.

Later that afternoon, at Marti’s meeting with Senator George LeMieux’s office (REP-FL), she focused again on appropriations requests. Because Senator LeMieux is a member of the Senate Armed Services Committee, the advocacy team highlighted that, according to the Institute of Medicine (IOM), military personnel may be at heightened risk of developing a form of blood cancer as a result of their exposure to chemical and biological agents. In fact, the Department of Veterans Affairs presumes blood cancers to be service-connected for Vietnam veterans and offers medical and disability benefits to affected individuals. The IOM has noted this link in Gulf War veterans as well.

Perhaps, the most profound meeting came at the end of the day, where Marti shared her personal struggle in dealing with the Medicare doughnut hole with the staff of Senator Bill Nelson’s office (D-FL). She was grateful that the recent passage of health reform addressed this issue, but made clear that in the 10 years that it will take to completely close this gap in coverage; many more myeloma patients will face the difficulties of finding the money to cover their treatment.

While it seems to take some time to get to real solutions in this tangled web of policies, and a lot of preparation and follow up is required to get results, we must remember - EVERY CONVERSATION COUNTS and if WE, as patient advocates, don’t speak up, who will?

Issues of importance to patients are getting lost in partisan battles in Congress. Get involved!

Myeloma Advocacy Update - January 31, 2010

Myeloma Advocacy Update - March 30, 2010

New! Survey of your experience in obtaining access to the cancer medications recommended by your physician.

President Unveils Health Reform Proposal

Research

Statement on the passing of Senator Kennedy

The Importance of Voting on November 2nd

The International Myeloma Foundation, Marking 20 Years of Serving the Myeloma Community, Applauds, Members of the International Myeloma Working Group for Their Body of Work Being Presented at the ASH Hematology Conference

We would like to congratulate and THANK E. Michael D. (“Mike”) Scott, an IMF board member, for being March’s Advocate of the Month and a driving force in building a strong advocacy presence for the IMF.

The text of the House fiscal year 2011 Continuing Resolution was released last week and it provides cuts to the cancer research and control programs at the National Institutes of Health, Centers for Disease Control and Prevention, and the Food and Drug Administration.

Rob and I became charter members of the WCCTA (WI Coalition for Cancer Treatment Access) because we believe it is important for the patient population to be represented in Wisconsin, and that patients and caregivers really CAN make a difference if we let our voices be heard.

The House voted to repeal 245-189 the Patient Protection and Affordable Care Act (ACA) on January 19. The symbolic vote was along party lines with only 3 Democrats [Representatives Dan Boren (D-OK), Mike Ross (D-AR), and Mike McIntyre (D-NC)] voting with the Republicans.

Marguerite McCausland has been a multiple myeloma patient since 2005 and joined our Action Network in February of 2010. Since that time she has sent a total of 27 messages to her legislators making her the most active advocate in our network!

Below is a summary of some of the legislative issues that IMF has followed in the second session of the 111th Congress. As you can see, we were successful on many important issues such as ensuring access to clinical trials and declaring September Blood Cancer Awareness Month.

Earlier this year, JoAnne and Billy Gunther, wife and grandson of William Gunther, Jr., who passed away from multiple myeloma, participated in OVAC’s (One Voice Against Cancer) lobby day on behalf of the IMF.

Congratulations and THANK YOU to Caethe Goetz, patient and founder/leader of the northern California Myeloma Stompers-Redwood Wine Country Multiple Myeloma Support Group, for being this month's Advocate of the Month!

The U.S. House of Representatives passed the Improving Access to Clinical Trials Act (HR 2866) on September 23rd. The legislation, which passed the Senate on August 5th, now goes to the White House where President Obama is expected to sign it.

One hundred cosponsors of H Res 1433 cleared the way for The House Energy and Commerce Committee to hold a hearing on this resolution, which encourages greater support for blood cancer research and education.

Representative Reichert Circulates "Dear Colleague" Letter to New NCI Director asking him to consider increasing the Institute's commitment to organ-specific research at the NCI through a targeted research program for the deadliest cancers.

Earlier this year, Marti Hill, patient and support group leader from the Tampa/St. Petersburg area, visited her congressmen in Washington to discuss issues that are important to her as a patient and to make some very specific requests that would benefit the myeloma community.

Jerry Walton, Support Group Leader, Southeastern Virginia, accompanied by the IMF advocacy team, visited Washington to talk to his legislators about the issues facing members of his support group and the myeloma community.

Does Your Representative Support Blood Cancer Awareness Month?
Resolution 1433 recognizes September 2010 as Blood Cancer Awareness Month. We need your help to secure 90 cosponsors before this bill will be considered by the House Energy and Commerce Committee.

Have Questions About the Temporary High Risk Health Insurance Pool?
The health reform law creates a temporary national high-risk pool that will be created to provide health coverage to people with pre-existing medical conditions who have been uninsured for six months.

On Tuesday, March 23rd, the President signed into law the Patient Protection and Affordable Care Act which transforms significant portions of the health care environment and contains a number of reforms that will be extremely beneficial for myeloma patients.

Progress in passing health care reform legislation has significantly slowed. Congressional leaders are currently determining how to pass this important legislation as well as what a final package might look like and what the timing might be.

Both the House of Representatives and the Senate forged ahead on health care reform; however, neither the House nor the Senate were able to pass their respective versions of health care reform before adjourning for the August Congressional recess period which begins on August 3rd. Unfortunately, this delay means that Congress will miss the deadline set by the President earlier this year to enact health care reform.

President Bush’s recent state-of-the-union speech set the stage for an annual federal spending proposal that threatens to further erode our nation’s long-standing commitment to advance the pace of medical research and drug access.

The science of cancer research holds unprecedented promise. Unfortunately, the issues of federal funding dominating the political agenda—for cancer research and drugs and treatments through Medicare—are not addressing this opportunity.

Thanks to the persistent work of Sen. Kay Bailey Hutchison (R-TX), the conferees to the Labor, Health and Human Services, and Education appropriations bill approved $500,000 to help support the IMF’s Bank On A Cure program.